Sticky Blood-Hughes Syndrome Support
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what happened??

Hi everyone I would like your thoughts on what happened to me on boxing day.

I feel asleep on sofa on Christmas day night and when I woke up three fingers on left hand where numb. I woke at 6 on boxing day and felt very bad, fingers still numb, I felt like I was moving and spinning around, very dizzy, the strength in my left hand was poor, my mobility was bad and I couldn't stand on left leg, I felt like I had aged about 40 years and was really struggling when standing and trying to walk.

I felt really bad until about 2pm and I did think about going to hospital, I asked my husband to take me but because I got back into bed he thought I didn't want go ( i never want to go but this time I did). He asked me what i wanted to take to hospital and that i should get dressed (was in pjs) but i had no energy and couldn't be bothered to get dressed so got back into bed.

Anyway I did start to feel more normal by late afternoon but yesterday I was wiped out all day. I didn't get out of my pjs or have a wash (yuk) and I went back to bed for 3 hours in the afternoon.

Today I feel more normal but still don't feel great, headache far worse than usual, very tired, and my vision not great.

Would appreciate people's thoughts, I'm thinking that either had a TIA or episode (depending on which of my drs I tell) or am I just deteriorating as I have been suffering the feeling of moving and dizziness on and off for couple of months (it was put down to a new drug verapamil as the dizziness started when I went on this drug, but I haven't taken it now for 5 weeks).

Any thoughts would be helpful.


18 Replies

I would definitly see the doc. You could of had TIA's or even a stroke, better to get checked out. But I don't know how things work in England as I live in US. But I would still see a doc and good luck!!!!


Hi thank you for a quick reply.



Hi Louise

This is pretty much how I spent my Christmas too.

It's basically what I consider a normal migraine and I have them every 10 days. Mine didn't clear up until yesterday and the next premigraine stage (aura) has already started. I find the vision problems and dizziness in some ways worse than the pain as the pain only lasts 3 or 4 days where as the vision and dizziness never goes away. I tried really hard to avoid lights etc just before the big day so I could enjoy Christmas day itself as my family noticed my "episodes" of absences were much more frequent with all the Christmas lights and sensory overload.

I think the Hughes brain likes peace and quiet and dim lighting


Sharon x


Hi Sharon

Thank you for replying, in the past I have been given migraine meds to try and help my headpain (it is constant) but all the drs I see say I dont have migraine, they have just been given as a try it and see and unfortunately they haven't got rid of the pain.

But the dizziness is new, the issue with my vision is that I have been told the week before Christmas that I have had what is best described as a stoke in my left eye. This confused me the prob with my left started in may and I saw 3 different people at the eye hospital who said there was nothing wrong so they were referring me to someone who deals with eyes and vasculitis and inflammation. I saw him in September and he said I had had a haemorrhage. I saw him again on 20th dec and I asked if my INR was too high and he looked at me like I was thick and said "oh no you need the warfarin, let me try and explain, it's like you've had a stroke in your eye". I thought a haemorrhage was a bleed so thought as my INR target range is 3.5 to 4.5 maybe it's too high.

Thanks again and may I wish you a happy new year.



It could be a TIA. I have many days like that, which is when my INR's are out of range. You should really see your GP. better to be safe than sorry. Good luck.


Hi Louise

had same over Christmas too. Mine due to low inr 1.2 on 7mg warfarin plus steroids etc. Which usually sends inr high. Weird!! Think mine was tia lasted just over a day. i get migraines but this different and will definately be gettin doc check it out!!

Scary cos couldn't speak. Just came out nonsense, more than usual, ha,ha!!

Go docs hon, better safe than sorry!!

Take care gentle hugs love sheena xxxxxxxx :-) :-) :-)


Hi sheena

I have a couple where I couldn't talk and to say its not nice is mild. Hope you're feeling bit better today.

Thanks for replying to me and take care.



Hi louise

If it had been me. I think I would have called the out of hours Gp or got your Husband to phone an ambulance.

Resting is good though It would have been interesting to know what your INR was.

Make sure you have information handy about your medical history and inform the medical staff about the need for the INR to be at the range you have been told Its needs to be

TIA / Stroke, can be cause from a clot or Bleed so treatment might be vit K or more anticoagulant

Were you put on verapanil / ?spelling because of high blood pressure and does the doctor know that you have come off it, there could be other medications that would be better for you.

It might be an idea to see your Gp tomorrow, so you could be checked out before the weekend

Sorry if I have mentioned everything you already know

Love Karen xx


Hi karen

I carry details of my meds in my diary and also a brief history of what's wrong and what's happened to me. I did that after an episode where I couldn't speak, it lasted just over an hour and my sister was trying to explain to the A and E dr what was wrong. I also keep a more detailed record so that when I go to hospital I can tell that what's been happening, if I don't write it down I forget, so I will have to add this weeks problem to it. I'd rather be writing a diary full of interesting trips and things I've done.

I had my INR checked yesterday so I'm interested to hear what it was, last week it was 6, put down to antibiotics so I had 2 days with no warfarin and then reduced dose of 9.5. Hopefully I should get the result in today's post, but am guessing that it was lower otherwise they normally call.

I have a few auto immune things going in so I think it is hard for the drs to know which one causes my probs, but they can all give same issues.

The verapamil was recommended by the neurologist to try and get rid of my headache. In order to start that they had to stop 2 of my blood pressure meds cos it is also a BP med. But when I started the verapamil I felt really bad, was in it for about 2 months and stopped it end of November and have gone back onto the original blood pressure meds. Sometimes though I'm not convinced that my drs know what's going on, they only stopped one of the BP meds and then I was seeing the diabetes nurse and she pulled up my file on screen and I saw a letter that said they had to stop 2 of the meds, so I told her that they hadnt done that. She went off to talk to one of drs and came back and just said stop it now!

And since the changes thy haven't asked me to go get my BP checked! Which I think is odd given that they have stopped some, started new drug, stopped that then gone back to original, you'd think that for the sake of a 5 min appointment with nurse they would want to check it.

My dr listens to me and is good at getting in touch with consultants for me but sometimes I think they don't know what to do and I'm not sure what they will say to me. I had a period of time where I was breathless ( it was right after I had been treated with IV cyclo) and he said that it was probably just anxiety!

Sorry I've harped on a bit there.

Not slept well again was tossing and turning most of night and been wake since 5!

I hope you are ok at moment and thank you for replying to me, I think hearing from other people with same issues keeps me sane.

Take care

Love louise x


Dear Louise

I'm Dave from near Bath iin Somerset UK

I have Primary APS and was diagnosed in 2002, by a neurologist in Bath, then sent by his haemotologist colleague to see Prof Hughes.

Before diagnosis I had frequent 'classical' migraines and also TIAs involving numbness in the right fingers that would start with the little finger, spread round the fingers one at a time and go away in the same order. The TIAs also caused memory loss and difficulty in speaking and putting sentences together. I also had two bouts of hepatitis, in the 1990s, for which no viral cause could be found; Prof Hughes said that these were most likely ischemic hepatitis. My liver functions never returned to completely normal after these two bouts.

Prof Hughes tried me on 75mg aspirin, to no effect, and Plavix, equally with no effect. He then suggested to my neurologist that I self inject 5,000IU of Fragmin per day. This had some effect. The neurologist, rather stupidly, suggested that my continued symptoms were anxiety and that I should stop all meds and tell myself that I am well! I did what he suggested and I had two 'classical' migraines in a day, which was a Sunday,prismatic blindness followed by headache. The second one came on when I was singing in a choir rehearsal and I suddenly stopped singing and couldn't speak. A friend drove me to the local 'Minor Injuries Unit' and during the drive I started to speak again but as if I'd had a stroke. The Dr at the MIU was useless and a person whom I had fallen out with some years before. Fortunately, I had the mobile phone number of my haematologist and I called him and left a voice message at 10pm and he rang me back within 10 mins. He told me to restart the Fragmin and to see my GP the following day to be given warfarin. Following the start of warfarin, under Prof Hughes guidance, my target INR range was established to be 3.8 to 4.2; I self test and self manage my INR, with my GP's blessing. This resulted in my migraines stopping and most other symptoms dramatically improving, including my liver functions returning to normal. I have, however, suffered a clot in the right hip and ishemia of the large intestine, even though I am on warfarin.

Christmas Eve 2009 saw a return of 'classical' migraines after 7 years and consulted my current neurologist, not the one who first diagnosed me, and he advised me trying 10mg Amitriptylene od. This has worked very well and has stopped these attacks. However, for the past 4 months or so I have been having similar incidents to what you have been experiencing: a sense of being pushed sideways or backwards or rotated and even the floor bouncing sometimes, followed by buzzing in the ears, dizziness, weakness of the limbs, tingling and numbness, including a sense that my arms are covered in cobwebs; these 'attacks' are often preceded by a click at the top of my neck, at the base of the skull. I had an MRI of the brain in September - my previous one being in February 2010 - and this new MRI showed that I had had a small, silent stroke during the past 18 months. My neurologist has not been very helpful about these new 'attacks' and say that: a) they are not a result of the stroke; b) they are not TIAs; and c) they are a kind of migraine. He suggested increasing my Amitriptylene by 10mg per day in steps to stop the attacks. I did this with no effect at all. I have researched myself and I consider that the 'attacks' are TIAs and not migraines. I believe that what is happening is a vasospasm affecting the vertibral arteries and causing an ischemic labarynthitis as well as affecting the brain stem. My cranial osteopath agrees with me and thinks that these 'attacks' are either due to a mechanical effect of the click in the cervical vertibrae on the vertibral arteries or an over reaction of the sympathetic nervous system, causing the spasm. My neurologist is refusing to investigate the matter further by MRI or MRA scanning of the cervical spine and has said to me that as I have had 25 or so 'attacks' and am still alive I should not worry abouth them!

Good luck with your problems and I wish you well.

I am seeing Prof Hughes again in February to discuss these issues with him and to ask him waht tests should be carried out.


I am too tired at this moment to answer these posts, but want to say how I identify with you and hope you get the answers you need soon. Dave, let us know how your appointment goes with Prof Hughes, we all will want to hear.


I really suggest you change your neurologist, They are clearly not caring for you.


Hi Jane

I will indeed.

Love to you all.

Dave xx


Many thanks everyone for your answers and I hope everyone is feeling okish?


You are welcome Louise and okish seems to be about all us in the Hughes community can ever feel.

Happy New Year to everyone.

Dave xx


Annie speak to your doc as everyone has suggested and Dave I hope you get the answers you need. I am aslo looking into the numbness as my small finger and the next two all go numb during the night andit wakes me up have to move my hand and aftwr a while it goes but takes a while.



I really hope things improve for everybody... and those who have poor care gain better practitioners or those willing to receive available training! Mary F x

Best Wishes and HAPPY NEW YEAR x


Just a though for similar situations in the future. I know some heart problems can be diagnosed from blood samples even after the event, (I've been told to ring for an ambulance asap if I have another particular type of heart pain as at least a blood check may help diagnosis) Might this also be the case for the circumstances of the original question? Isn't it worth giving the docs a chance to take blood and check?


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